Hydrocephalus Association Incorporated

Support and education the hydrocephalus association is deeply committed to improving the lives of those affected by hydrocephalus by providing direct support as well as educational resources in collaboration with a wide range of stakeholders to raise awareness and knowledge. In 2024, ha staff provided one-on-one support through phone calls, emails, and interactions on social media totaling over 5,100 touches. Ha conducted a total of 201 virtual social gatherings and/or educational meetings with medical and other professionals joining as guest speakers in our local support groups - community networks. These events provided our community with the opportunity to find friendship and receive education. Our peer support volunteers made 82 connections to provide first-hand knowledge and experience on living with hydrocephalus. New national level group emerged, one for men with hydrocephalus. The association continues to support our young adults' academic pursuits through our scholarship program. Established in 1994, ha has awarded 252 scholarships to deserving future leaders of the hydrocephalus community. In 2024, ha offered 13 educational scholarships to young adults living with hydrocephalus who exhibit promising leadership skills and are involved in their communities.

Advocacy the hydrocephalus association advocacy committee has continued to monitor and support key legislation that will benefit the hydrocephalus community. Hydrocephalus was once again included on the list of eligible conditions to receive funding under the congressionally directed medical research programs (cdmrp) and administered by the department of defense (dod). The cdmrp has appropriations of $15.61 billion, which are used to fund the best scientific and medical research. We are proud of this continued accomplishment. Ha continues to co-lead with the spina bifida association a coalition focused on issues around children with chronic medical conditions transitioning to adult medical care and services. Ha also continues to be active in advocacy meetings and sign-on letters put together as part of the national health council (nhc), american brain coalition (abc), national organization for rare disease (nord), research!america, and the national heath defense consortium (dhrc).

Conferencesthe 18th national conference on hydrocephalus, ha connect, was held in tampa florida july 14-16, 2024. The national conference attracted participants from 46 states. 552 individuals attended the three-day event. The conference featured educational tracks for parents, teens, adults, and individuals living with normal pressure hydrocephalus. There were over 70 educational sessions held with over 80 speakers. The conference featured an interactive exhibit hall to engage attendees. Additional events were hosted around innovation and research.

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